Caregiving parents put their trust in a trailblazing children's home

Kevin and Sarah's 14-year-old Daniel has cerebral palsy, autism, epilepsy, swallowing disorder and ADHD. When we first adopted him we knew that he had cerebral palsy and as we got to understand him more, take him to different doctors, we definitely learned more about his neurologic condition, about the epilepsy. We learned slowly about his behaviors. What was cute as a little child ended up being a little bit harder to manage as he got bigger. He takes quite a few different medications and then he aspirates on all liquids and so every drop of anything that he gets has to be thickened. He also chokes a lot on different foods and so caring for mealtimes is a pretty intensive process for him. Caring for Daniel is a full-time job but the Lockwoods can get temporary relief from the rigors of caregiving thanks to the George Mark Children's House, a four-hour drive from home. George Mark is the first pediatric palliative care home in America. We delight in making days here for the kids that come, the most incredible days that they have sometimes in their life and we take care of kids and families across a spectrum of life-limiting diagnosis. We offer respite care for kids from their birth until their 25th birthday. George Mark was founded by Dr. Kathleen Nicholson-Hull and named after her brothers who died young. The center prides itself on creating a home-from-home for its guests. One of our biggest programs is our respite care program so that allows kids who have a serious medical condition to come stay at George Mark and have kind of like a camp experience where they have different fun activities, they meet other kids going through health care challenges and their parents or caregivers get a break from the round-the-clock care that their child needs. Oh thank you so much, the most beautiful rose I think I've ever seen. For parents like the Lockwoods, letting go of the reins can be a leap of faith. We did a trial stay and so I stayed with him the first night and so I got to see how it is that they care for him but still walking away that second night there then he stayed. I was a little bit of a wreck and I didn't quite know what to do with myself. But mom and dad's anxiety is not shared by Daniel. He loves getting out, he loves getting to do things like his siblings do. He doesn't get time away from us either. And when Daniel's happy his parents are happy for their son and for themselves. Respite for us means actually being able to not just step away but to not have to think about it. We can actually mentally disconnect from any fear, any worry about caring for him. We know that he's in good hands and that's really reassuring because it's the only time that we're able to really trust everything's handled.